Parent Voices

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21/09/2015 13:14 BST
|Updated
21/09/2016 06:12 BST

The Big Bad Ride

Nick Taussig
British novelist, film producer, father of two beautiful boys with Duchenne muscular dystrophy

This week I embark on a bloody long cycle from Edinburgh to London with a number of old school friends. Why we lost touch I do not not know, but that we are in touch again, and will be together as we make our long way down, fills me with joy and wonder.

Tragedy has the curious habit of bringing those we've lost contact with back into our lives. When I found out last year about my sons' fatal diagnosis, I was reeling, my mind frantically trying to make sense of what had happened, why such a fate had befallen me, my wife, my sons.

I scoured my past, recalling as much as I could, some memories imbued with great significance, others, with little; some interpretations with hope, others, despair. The narrative in my mind was like a broken record, repetitive and tuneless, consumed by a false logic. Yes, this has happened because of this. It must have done. There is no other explanation. And on, and on.

I had learned long ago, though, not to place too much stake in past reflection, particularly during times of crisis. The mind is its own worst enemy and does not offer meaning and solace, but nihilism and chaos. Three years of psychoanalysis had taught me this, the unquiet mind possessing a striking propensity for melodrama and catastrophe. Was it not inevitable that it would lead to this, that I must face what I do now?!

Such fateful thinking is unhelpful, not least because it's clear that, if we try hard enough, we can explain anything to ourselves. I would not find an answer in my past for why my two sons' muscles are wasting. No, rather, they were simply born this way, without proper functioning dystrophin genes. That's it. No more than this. And why? Because nature's like this, all of us different, none of us perfect, some of us with overt weakness, such as Duchenne, and others with a more subtle form, barely visible but still present.

The word 'disability' has infinite meaning, something we become acutely aware of when we are the parents of disabled children. We realise that disability is manifest not only in the body but also the heart. Someone might be tall, strong and handsome, a seemingly perfect able-bodied specimen, but they are emotionally disabled i.e. an arsehole.

Amidst the disorder and heartache of those first few months of diagnosis, trying to come to terms with my son's deteriorating bodies, there were moments of striking clarity, my mind drawn to those that matter, in particular to lost friends, my dreams full of school days.

There was Nick Rucker, whom I'd been so close to. We spent most of our teens striving to be as madcap as possible, spurred on by the likes of Monthy Python, inventing an infinite number of silly voices and even sillier, and frankly absurd, faces. When we were not fooling around, we prided ourselves on being great artists one day, and sportsmen the next, though we were neither. It was Nick who suggested we do something for Theo and Oskar, and preferably something as foolish as trying to ride the length of Britain, or close to it. Neither of us even owned a bloody bike.

Before I knew it, Nick had also pulled in others to join us, old school friends such as Dan Croft, whose mischievous sense of humour, inventiveness and goodwill I remember so well. Dan had the wonderful capacity to disrupt anything. And Mike Barnard, a rarity in a head boy, sharp-witted and fiercely intelligent but also profoundly decent and humble, a combination that invariably won us over.

As ill-qualified as the two Nicks to undertake such a long ride - neither Dan nor Mike owned bikes either - the perfect team was, therefore, assembling. And Nick Lawson, the year above us, would be joining too, possessing a great empathy and fierce determination to help the vulnerable and marginalised, born out of the tragedy of losing his own son when he was very young.

Two experienced riders accompany us, thankfully, Luke Bordewich and Dave Morrison, both of whom we novices would be lost without. And then there's Chin Nicholson providing team support, and Mark Dressel, who's worked hard to get me ready the last few months with intensive watt bike training. "I will help you to understand your engine," he explained to me during the first session, as I looked at him rather confused, unaware I even had such a thing.

Old friends and new have come together for The Big Bad Ride, and I realise how fortunate and privileged I am to have friends like these, who, in spite of the demands of their own work and families, quite simply, want to help, and more than this, are willing to suffer along the way. Riding 460 miles or 740km is not easy. It hurts. But they want to do this, will put their bodies and minds through this.

It was Nick who said to me not long ago, "Hey, there's not enough love in the world." This statement captures well what is, in truth, most important, the capacity to actively love, to have a big heart, to not be an arsehole. If I were to find any great wisdom or truth in my past, it would be this, that real love is not something which comes easy to us but rather something we must dedicate ourselves to, work at, persist in, fight for.

Before I learned that my sons might not reach adulthood, I loved them, but differently from how I do now. My love was, in many respects, a passive one. The love I have for them now, though, is more conscious, determined, deliberate. I want them to be happy, to possess a real joy and love of life, and to this end will stop at nothing to ensure neither is excluded in spite of their illness, that they can have all the things that their contemporaries have, in particular good friends.

Theo, just four years old, already cherishes Max, Ben and Lewis. He missed them terribly during the summer holidays and longed to be with them again. On his birthday, finally reunited with them, he was unable to contain his joy and excitement, wrapping his arms around each of them and holding on for dear life through fear that they might leave him once more.

Now at school, these friends become evermore important as his body starts to fail him, and I hope, for his sake, they will love him as actively as my school friends love me, doing what they can for me and my sons.